Abstract

PURPOSE: Idiopathic Pulmonary Fibrosis (IPF) is an illness known to have a poor prognosis and few therapeutic options. The goal of this study was to investigate the understanding that patients and their family members have of the severity, cause and treatment options for IPF and to catalog the symptoms that afflict patients with IPF.

METHODS: IPF patients and their family members were surveyed during a support group meeting. The valid and reliable self-administered Illness Perception Questionnaire (IPQ-R) was used. The IPQ-R utilizes a five-point Likert response scale.

RESULTS: Thirty-three IPF patients and twenty-three of their family members were surveyed. The most-reported symptom by patients was fatigue (97%, n=32). Breathlessness and cough were also common (91%, n=30 and 88%, n=29 respectively). Sleep difficulty was endorsed by 58% (n=19) of patients. Most patients understood their disease to be a “serious condition” (97%, n=32) and 88% (n=14/16 responses) of family members understood the patient might not survive IPF. Most patients (70%, n=23) disagreed with the statement there are not effective treatments for IPF. Family members reported that the patient's treatment would be effective (64%, n=9/14) yet 71% (n=12/17) of family members reported that they “do not understand” the patient's illness.

CONCLUSION: Fatigue and disrupted sleep are under-appreciated symptoms affecting patients with IPF. Patients and family members understand IPF to be “serious” but do not perceive the paucity of therapeutic options.

CLINICAL IMPLICATIONS: Evaluating and treating fatigue is important in the care of IPF patients. Better education is needed for IPF patients and their families to make them aware of the limited treatment options.

Return to: PERCEPTION OF ILLNESS IN IDIOPATHIC PULMONARY FIBROSIS: A PROSPECTIVE SURVEY OF PATIENTS AND THEIR FAMILY MEMBERS

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